I stay so tired and weak. Most of the time I feel like so little life left in me. Has anyone else ever felt this way?
susanep/susan
Yes. Drained of all energy. No zest for life. Please seek help. I see a shrink once every two months to help me deal with this. I also take cistanche that helps. It has increased the warmth in my body and my energy levels. I have started to do things again.
Often we have less pain when we stay in our caves (homes) hidden from the sun. But that adds to our low energy and depression. We tend to go out for food and doctor appointments. It is the UV of the sun that makes our condition worse.
Yes, Susan, I'm there now with a couple of new 'conditions' which keep me dependent and housebound.
I see my therapist every week and take Cymbalta.
I don't know what to do, but since I can do so little, this is a time for acceptance.
Regards, Elaine
Hey Elaine - you just hit 5000 posts! You are awesome, and one of the stalwarts of this forum. Thanks
Quote from: Carolina on August 16, 2016, 05:28:20 AM
Yes, Susan, I'm there now with a couple of new 'conditions' which keep me dependent and housebound.
I see my therapist every week and take Cymbalta.
I don't know what to do, but since I can do so little, this is a time for acceptance.
Regards, Elaine
I'm so sorry.
Some things that have helped me along those lines include:
1. Drinking LOTS of water (dehydration will really drain a person)
2. Certain vitamins like D3, coq10, b complex, a little extra B12 (methyl type) and a little extra B6. I take name brands and usually buy them at an on line site that is a little cheaper than the store. PM me if you want the link.
3. Reducing sugar and flour intake
4. Increasing vegetables and fruit (particularly vegetables) intake
5. Doing my best to get a good night's sleep. Easier said than done. I take a sub-lingual brand of 1 mg of Melatonin. I take 2 most nights and occasionally I take 3. Once in a while nothing or 1 mg. So, I'm taking between 1 and 3 mgs., which is a LOW dosage. I judge how sleepy I am before taking any at all. The low dosage doesn't bother me at all and helps me sleep.
6. If I'm having unusual stress, I will see a therapist for a few visits. I don't wish to go regularly because I just don't think its been needed. But, I have someone that I trust and it is great to know I can talk something out that bothers me and move forward.
7. If I'm unusually tired or sickly, I try to remember that "this too will pass" and cancel appointments and stick around the house, many times in bed, for a few days. And, easier said than done, but try not to let it bother me. Within a few days, I'm usually better. Still not like others without health issues, but more able to participate in things and more upbeat by far.
I hope you feel better soon!
PS Once in awhile, when I've eaten well and I still don't feel good, I eat COMFORT food. Some chocolate chip cookies etc. Next day, I try to get back to my healthy eating. Little treats are ALWAYS fun fun fun. Thinking of you.
Dear Susan,
Yes, I do feel like someone has pulled all the energy from my body. And at times I can't recuperate, no matter what I do.
The first thing I have learned is that I require a good night's sleep. Long enough, uninterrupted, in order to have a fighting chance at the start of my day.
Managing my pain has proven critical too. I am seeing an acupuncturist, chiropractor, physiotherapist, rehabilitation specialist, and pain specialist.
And last but not least, my emotional and psychological well-being needs to be addressed. I see a therapist when required, have good support from people who care, exercise mildly daily, meditate, do things that offer me joy.
You have been in a high stress, emotionally draining several years, Susan. That in itself takes a major toll. And many emotions will follow, now with the passing of your dear dad.
You are not alone, Susan. Hugs to you across the miles.
Joe what is the cistanche you mentioned? I don't think I have heard of it.
I am considering seeing a therapist for a few sessions also. I already have been on antidepressants for years due to a chemical imbalance without them. It's just the worsening of the autoimmune disorders that take me down.
Also watching my father slowly die didn't help. My mother went quickly with no one knowing it was going to happen.
susanep
This (what you describe) is also part of the shock and grief that goes along with the loss of your father. It is really hard to be ill ourselves and have the energy to deal with the death of a loved one. The death of a loved one also brings with it all the social/emotional issues that go along with getting things planned and dealing with relatives ( the worst sort of animal at times like this) plus enduring all that takes place. You run on nervous energy that people like us don't have in big supply.
I have to tell you that being ill and caring for my hubby all those years literally wore me out and I have not recovered yet nor do I think I ever will. Your fatigue is something that comes with the immune issues plus can be made worse by the depression we have. You need to take care of yourself....period. Sleep, eat, bath, take your meds, seek help with antidepressant meds as needed plus watch your blood sugars. Your blood sugars will go up if you are inactive so it is important to walk in the house at least.
I am also thinking that with all you have gone through, you will probably find that the cool fall weather will give your spirit a little boost. Know that your Mom and Dad are safe now and it is time to put off any worry and just rest. Get out of the house even just to sit in a lawn chair. Do not expect anything much of yourself until you have taken care of your psychological and physical needs. Know that blood sugars play a huge part in our energy level and our mood.
Hang in there and you will make it through this as you are a survivor. Remember that shock is what really adds to the way we feel. We are numb, weak and have no motivation to get anything done. Even making a piece of toast is a major battle at times like this. But....try to do things for yourself so you don't lose muscle strength. God Bless and Hugs. Irish
I understand that feeling, Susan. It was my rheumatologist who recommended I seek a therapist to help with the affects of living with long term chronic illness. My acupuncture treatment also helps me deal with the anxiety we can experience when our bodies are under attack for so long without a break.
Susan ..... I am so sorry you are feeling so weak and tired. It is terrible to feel that way all of the time.
I notice that you have Lupus and Sjogren's Disease, both of which can cause you to have no energy and be fatigued.
You are also on many medication, some of which may be contributing to your fatigue and no energy.
I am wondering if your Rheumatologist has considered trying some other medications such as some of the immune suppressants and biologics, to see if you would see some improvement from them.
It seems like your Rheumatologist should be considering some of the immune suppressants or biologics to see if any of them will improve your condition.
If your Rheumatologist is not interested in trying some other drugs/treatments to help you, maybe a second opinion or a new Rheumatologist is something that would be worthwhile for you.
From my own experience, I was weak, extremely fatigued, barely able to make it day to day, along with many other symptoms. My Rheumatologist tried several different drugs to help me. Prednisone tapers helped but we did not want to do that every day. Imuran made my liver enzymes skyrocket. Cellcept, which works for many, made me sicker than I already was.
But, then she ordered Rituxan infusions. I had my first set of Rituxan infusions last Feb. and March. Rituxan has worked miracles for me. Rituxan has given me back my life.
It is terrible to have to live with fatigue, weakness, and no energy. It may be worth it for you to try some of these other medications to see if you can get some improvement. I truly hope you can get some new treatment and get some improvement.
Hi, I researched and saw that Arcalion (sulbutiamine, is sold by United Pharmacies or Amazon in USA, ) I have taken one pill everyday nonstop for 28 yrs ,although dose is 2 pills, and I don't know if about taking it nonstop, but I take it nonstop. It really helps with my chronic fatigue. Please Carebear explain what exercise mildly means. Also I'm taking Magnesium Chloride, which really helps everyone who takes it with aches,pains neuropathy ... avery big range of afflictions. I recommend Arcalion and M.C
trejonina - by mild exercise, I mean any sort of movement that does not impact your joints. I walk, slow paced, 30 minutes daily. I started at 5 minutes and built up my strength over about twelve months. I enjoy walking but choose something that suits you.
I used to do water exercise in a class that was designed for people with arthritis but after two years I had to discontinue because it was causing neck issues. Otherwise I would still be doing it.
I sure appreciate all of the different comments from each of you. I had gone to lay down a bit, and my husband told me when I got back up to make sure to read them all. He is always trying to help me.
Thank you everyone,
susanep
Thank you Susan for being so open with us. Your honesty keeps us on our toes and searching for anything that can help us a little bit. I agree with the previous statements about seeing a therapist. I know that I have kept myself here because of seeing a great woman. Next week I will be back in her office with these new things that are going on.
I don't know how much walking you can do but get out for a moment. Find something outside that gives you joy. I like watching children and dogs play. What joy! I also like looking at the ocean on a clear day. I will try to push myself to do that today. My favorite thing to do is watch my son perform and hopefully when he does it again I will have enough energy to go see him.
I also realized watching people on Facebook was not good for me. Seeing people my age traveling, going out on dates, having parties was not good for me when I am just locked up in the house with no visitors. My daughter said she is tired of living with me so now I either have to go live in a nursing home or in my car. My son has an agency that found him a place to stay for his autism. Yay...I count that as a blessing. He will stay there forever.
I guess I am saying that keep talking with us, to your therapist, let your hubby know you are grateful and try to move. I will get up now and take my own advice I am giving you.
Let your mind find its way to a peaceful place for twenty minutes a day. Start with 1 minute if you have to and build it up.
Love and blessings to you
Angeldancer
Angledancer, that is so sweet of you. I truly have you and everyone in my prayers.
susanep
Hi susanep and all,
I do gentle exercise in water. The best it to be in water up to my shoulders because it supports me. Then I do a series of aerobic exercises with those foam water weights, one in each hand.
I do a routine I learned years and years ago, and it is just automatic now. I even float on my back and then do ab crunches! Nothing hurts, it all feels soothing. Just walking in the water is the exercise that some do in the pool at the fitness center. There are several pools, all salt water, ranging from about 88 degrees up to 103 for the hot tub.
Afterwards I feel calm and peaceful and my body is relaxed.
Hugs, Elaine (aka Carolina)